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The Down Syndrome Community (“DSC”) is a registered 501(c)(3) organization serving the Puget Sound area whose mission is to provide impactful programs and resources for individuals with Down syndrome and their families while evolving perceptions in the broader community.

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Spotlight On: Research Studies benefiting Down syndrome

Always happy to advance scientific knowledge, we interviewed several
researchers in the Puget Sound area – Nicole Simard, Roxanne Hudson, and the
DSC Learning Program’s own Katy Bateman – who are recruiting participants with
Down syndrome for their studies. Focused
on enhancing our understanding and finding ways to provide better tools for
individuals with Down syndrome and their families and caregivers – each
research project is an exciting new venture and opportunity for us! Some are specific to individuals with Down
syndrome (Ds) and some expand to individuals with any intellectual or
developmental disability (IDD).

Families wo have already participated in the studies are
enthusiastic about encouraging participation. DSC members Gail Lee, Alison
Winfield, and Alison Burchett gathered their kids to for the brain development
study. “By participating in the study, I am hoping to help doctors
understand more about Ds and how to help all people with Ds live their best
lives” says Alison Winfield. Gail Lee adds that they all “enjoyed contributing
to science with the bonus of a fun trip with friends to Utah! These kids were
rock stars, especially in encouraging each other for the challenging MRI.”
Alison Burchett’s son is also participating in the reading development project,
“It’s coordinated with his teachers at school, so it fits seamlessly into his academic
plan.”

Read on to learn about 4 different projects and see if you or your
child qualify to participate!

UW Reading
Development Project

What is the purpose of this research? The
purpose of the project, which is the first of its kind in the nation, is to
address the large knowledge gap about reading development in children with
intellectual and developmental disabilities.
This will help their teachers better understand what to expect from
their students and have a metric to compare their progress against. In order to do this, we seek to understand
the reading developmental trajectory of students with significant support needs
in cognition and adaptive functioning, predictors of their later reading
success, and the instructional context they are in.

How will this benefit the community of individuals with Ds/IDD? For too long, we have had excessively low
expectations for learners with intellectual and developmental
disabilities. As teachers have focused
more and more on reading intervention for this population, it is clear that we
need more research to understand what reading development looks like in this
group of children. As well, we will use
the information from this study to develop a reading intervention that we
expect will be more effective than the small number of options that exist
today. Roxanne
Hudson and Carly Roberts both prepare special education teachers, and we will
use the information from this study to prepare more informed teachers who will
do a better job of teaching children with IDD in the Puget Sound region.

What makes this study unique?
There are several aspects to this study that make it unique. First, the research on students with IDD
primarily consists of European children residing outside of the United States
who speak a language other than English. Since predictors of reading success
can differ depending on language of instruction, little is known about the
reading development of students with IDD in the U.S. Without this important
knowledge, it is difficult to design effective interventions for evaluation.
This is the first study of its kind in the U.S. There has been no large
longitudinal study of reading development in the United States before now.

What will participants and their families receive in joining the
study? A yearly report of reading
assessment information that, with parent permission, will be shared with their
child’s teacher to help improve their education. $50 gift card as a thank you for their time
and attention. A choice of testing
locations.

What else should families know about this study? The study
requires a lot of assessment, but unlike children who are typically developing
or have a learning disability where these ideas are well known, this type of
research has never been done with children with IDD before. We need to get a clear picture of who the
children are in reading and language. Once
kids qualify, we will assess them once or twice a year beginning I fall of 2020.

Who can participate in this study? We are recruiting children in kindergarten,
first grade, and second grade now for screening this spring and then the full
assessment in the fall. We are looking
for children with significant support needs in intellectual and adaptive
functioning. We will screen each child
using the Vineland test of adaptive functioning with an online form parents can
fill out. Once the stay at home order is
lifted, we will give an abbreviated IQ test.
Children with many types of disabilities may qualify, including multiple
disabilities, developmental disabilities, Autism Spectrum Disorder, intellectual
disability, and Down syndrome.

Where will the study take place? We can do assessments in the parent’s choice
of home, our testing office near the University Village, or a public library
once the stay at home order is lifted.

Infant Brain Imaging Study – Brain Development in
Infants with Down Syndrome

What is the purpose of
this research? The goal of our study is to increase our understanding of how the
brain is affected in children with Down syndrome. This may provide clues that
could eventually help identify therapeutic targets for interventions for
individuals with Down syndrome.

How will this benefit
the community of individuals with Ds? Our participants are benefited directly by receiving feedback
from behavioral and developmental assessments that are similar to those
provided by clinicians in the community. For the larger community this study
holds the promise of expanding our understanding of the brain and behavioral
development in children with Down syndrome and could provide insight into new
therapies and ways to support optimal outcomes.

What makes this study
unique? To our knowledge, thisis the first study of its kindstudying
early brain development through MRI imaging in babies with Down Syndrome!

What else should
families know about this study? Participants
will complete developmental assessments (including an assessment of motor,
language, and nonverbal problem-solving skills), questionnaires, and an MRI of
the brain (during natural sleep) at 6, 12, and 24 months of age.

What will participants
and their families receive in joining the study? Families will receive developmental feedback from
assessments, and, if appropriate, referrals and recommendations for follow-up.
They will also receive images of their baby’s brain from the
MRI. They also receive $125 compensation for participating in the study
and reimbursement for certain travel-related costs.

Who can participate in
this study? Infants with Down
Syndrome between Birth and 12 months of age. We hope to enroll families by the
time their baby is 6 months old, but if your baby is older study participation
can begin at 12 months.

Where will the study
take place? Behavioral
assessments take place at the University of Washington and MRI scans
at Harborview Medical Center.

Who should I contact to participate in the research? i[email protected] or 206-543-2125 Please don’t hesitate to contact us with questions and to see if you qualify for the study! Click here for flyer.

Brain Development in School Age Children with Down
Syndrome

What is the purpose of
this research? Like the infant
study, the goal of this study is to increase our understanding of how the brain
is affected in children with Down syndrome. This may provide clues that could
eventually help identify therapeutic targets for interventions for individuals
with Down syndrome.

How will this benefit the
community of individuals with Ds? Our participants are benefited directly by receiving feedback
from behavioral and developmental assessments that are similar to those
provided by clinicians in the community. For the larger community this study
holds the promise of expanding our understanding of the brain and behavioral
development in children with Down syndrome and could provide insight into new
therapies and ways to support optimal outcomes.

What makes this study
unique? There are very few
studies that look at brain and behavioral development of individuals with Down
syndrome.

What will participants
and their families receive in joining the study? Families will receive developmental feedback from
assessments, and, if appropriate referrals and recommendations for follow-up.
They will also receive images of their child’s brain from the MRI, which our
school-age participants have loved seeing! They also receive $100 compensation
for participating in the study and reimbursement for some travel-related costs.

What else should
families know about this study? Participants complete a behavioral testing assessment and an
MRI brain imaging assessment. The behavioral assessment includes tasks that
assess problem solving, academic skills, motor development, and emotional
functioning. At the behavioral assessment, children practice the MRI in a
pretend MRI scanner with a trained behavior specialist to simulate the
experience of an MRI. The MRI brain
imaging assessment takes place when the child is awake at Harborview Medical
Center or the University of Utah. If participants travel to Utah, the cost of
flights, hotel and car rental will be reimbursed.

Who can participate in
this study? Children from 7 to 11
years of age with Down syndrome.

Where will the study
take place? Behavioral assessments
take place at the University of Washington. The MRI may take place at
Harborview Medical Center or the University of Utah.

Who should I contact to participate in the research? i[email protected] or 206-616-8839. Click here for flyer.

Meeting the Need: Increasing Access to Applied
Behavior Analysis Services in Washington State

What is
the purpose of this research? The purpose of this research is to
increase access to ABA services for children with a diagnosis that falls
outside of the autism spectrum. Because insurance covers ABA for ASD diagnosis,
barriers and challenges are present that inhibit many families to access
intervention shown throughout research to increase quality of life for children
with disabilities. The purpose of this research is to provide parents with
strategies and skills rooted in the principles of ABA to increase quality of
life at home. Families of children with disabilities report higher levels of
stress, anxiety, and depression. My hope is that this intervention provides
families with a social network of other parents navigating similar situations.

How will
this benefit the community of individuals with Ds/IDD? Strategies
and skills taught during this intervention will target behavior. Especially
with children home due to our current health crisis, families are reporting
increases in challenging behavior as common daily routines are turned upside
down. This intervention aims to provide families with skills to prevent and
respond to challenging behavior in their home. Additionally, this intervention
aims to create a social network for families. my hope is that a community of
support is developed. It is difficulty navigating the many services children
with developmental and intellectual disabilities receive. I want families to
know that they have a group of people behind them ready to support them as they
navigate similar experience beyond this parent coaching intervention. We are
all in this together.

What makes
this study unique? It is difficult to access ABA for the down
syndrome community due to insurance coverage. Additionally, this intervention
is online. Participants from around the state are able to attend and
participate.

What will
participants and their families receive in joining the study? Increased
knowledge and a community of support!

What else
should families know about this study? The coaching spans 16 weeks, starting May
13th, on Wednesday nights from 7-8.

Who can
participate in this study? Families of children 1.5-8 years of age who
are diagnosed with a developmental or intellectual disability who do not have
access to ABA services

Where will
the study take place? Zoom! – an online conference format.

Who should I contact to participate in the research? Katy Bateman [email protected] (Katherine Bateman, Ph.D., BCBA-D). Click here for flyer.